My son Gabby was diagnosed with Epilepsy last October 2008, he was 9 years old. He was confined at the hospital after having a seizure while he was with his aunt. I didn’t really believe he was epileptic, he had a few moments in the past when he would black out, like stare absentmindedly, then be back to normal in a few seconds. I didn’t realize that it was already a seizure. I was working at that time and my sister was looking after him. I was in denial, until I experienced for myself his first grand mal seizure.
I cannot even express my fear as I watched his eyes roll up, his limbs stiff and shaking. He wasn’t breathing, and to me it looked like his eyes were sinking and suddenly there were dark circles under it. His lips was so pale and when it finally stopped, he said he couldn’t see anything. I told him to close his eyes, to relax and just listen to my voice. I talked to him and told him everything would be alright. When he opened his eyes he asked me “Mommy, what happened?” He had no recollection of his seizure.
I didn’t know anyone in our family who had epilepsy. It could be some stray gene, or maybe a result of some trauma on the head. But I didn’t think a few little bumps would cause an epileptic attack. But the medical tests show that he does have some abnormal brain patterns.
We were referred to Dr. Ignacio “Chingky” V. Rivera. He handles Neurology for kids in Medical City Ortigas and Cardinal Santos in Greenhills. He has this air about him that makes parents feel calm. He reminds me of the singer Gino Padilla. He doesn’t beat around the bush and will tell you what to expect, what to do when seizures happen and how to do it. We made frequent visits to him during Gabby’s first year of being diagnosed with Epilepsy. It was every other week on Saturdays- 10AM to 12 PM at Cardinal Santos Medical Center, then it became monthly, and every quarter.
Gabby was prescribed a medicine called Trileptal (around Php 700++ or $18/bottle ) which he increased in dosage when Gabby started gaining weight.The medicine, as his dosage increased, would only last a week. So we were spending around Php 3,000 a month just for his medicine alone.
Gabby felt sleepy when he started taking this medicine. Sometimes his teachers would talk to me and tell me they had caught him sleeping during class. But after a few months his body must have adjusted to the medicine and I didn’t get complaints from the teachers anymore. Together with his condition, we slowly changed his diet. Eating more fish, fruits and veggies and less fast food and chips. We also spent less time on TV and video games, and we encouraged him to read more. We tried to avoid him getting too tired. I gave him massages at night and made him sleep in the afternoon.
April 2009 Gabby had an EEG test (it costs Php1,805 at the Medical City) and it still showed abnormal brain wave patterns. His last grand mal seizure was December 2008. The doctor advised to continue his medication and still, to monitor for seizures. We continued making Gabby sleep early and get lots of naps during weekends. We bought him a bicycle so he could get some exercise, and he played basketball with kids his age. No seizure during this time. Only a few hours of TV and video games. Seriously, we rarely open the TV. We only open it at night to check on the evening news, but during the day, if Gabby is home, we go out or he gets on his bicycle and bike around the neighborhood.
April 2010, his EEG exam showed normal brainwaves! We were so happy. Dr. Rivera told us that if by December 2010 , if his EEG results still show normal brain waves and he still had no seizure, he could start taking Gabby of his medicines.
January 2011, Gabby’s EEG results showed normal brain patterns again and still no seizure. Dr. Rivera gave us a big smile and asked me “Are you ready for this?
“Ready for what doc?”
“We are going to take him off his medicine”
Dr. Rivera gave us a schedule to follow for taking him off his medicine:
- February 6-19 5ml every morning and 8.5ml at night.
- February 20 – March 5 5ml every morning and 5ml at night.
- March 6 – 19 2.5ml every morning and 5ml at night.
- March 20- April 2 2.5ml every morning and 2.5ml at night.
- April 3 – 16 2.5ml at night only.
- April 17 stop medication.
The doctor advised us that if he should get another seizure during this period, we shouldn’t panic and just bring Gabby back to him. But he said he hopes we wont have to come back again.
I know in a lot of my research in epilepsy, a lot of people say that this cannot be cured. I have been praying that Gabby would be cured, but I was ready if in case he wont. I am happy for this wonderful news and I hope that he wont get any seizure and start living a normal life again.
I am writing this post to all you mothers out there who have children with epilepsy. We dont know why this happens, whether there is a cure or not. Maybe early detection can help. Thanks to medicines and proper diet and exercise, maybe this can help our children heal faster and lessen their seizures. All I know is there is hope, and I see it every time I look at my son.